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Key points

  • Craniosynostosis is best managed in a multispecialty tertiary referral unit
  • Speech and Language Therapists (SLTs) work collaboratively to maximise the individual’s potential for feeding and communication development

What are craniofacial conditions?

Craniofacial conditions affect the growth and development of the skull, the face and associated structures. The treatment of craniofacial conditions is commissioned by highly-specialised services from NHS England and carried out at four designated supra-regional craniofacial services. These are based at the following hospitals:

  • Alder Hey Children’s Hospital - Liverpool, Alder Hey Children’s NHS Foundation Trust
  • Great Ormond Street Hospital - London, Great Ormond Street Hospital for Children NHS Foundation Trust
  • John Radcliffe Hospital - Oxford, Oxford University Hospitals NHS Foundation Trust
  • Birmingham Children’s Hospital - Birmingham, Birmingham Children’s Hospital NHS Foundation Trust

These services provide assessment, surgical treatment and long-term follow up for patients with congenital, combined cranial and facial deformities within a multidisciplinary team. The speech and language therapist is a core member of the team.

Emerging evidence from the four UK craniofacial units suggests that children with non-syndromic craniosynostosis are at a greater risk of speech, language and communication difficulties than the general population.

Evidence shows that impaired communication can have an adverse impact on literacy, social skills, peer relationships, self-confidence and behaviour. It is your responsibility to minimise this impact.

Role of speech and language therapy in craniofacial conditions

Liaison between craniofacial unit SLTs, local SLTs and other community services is essential. This will ensure that condition-specific advice and intervention can be planned and delivered to ensure the most effective outcome for the child/adolescent and their family.

Key Organisations

  • Headlines is a charitable organisation based in the UK, which aims to provide support to all those affected by craniosynostosis and associated conditions. There is a vast amount of information on both syndromic and non-syndromic craniosynostosis available through this site.